Apr 12 2014, The Toronto Star
The Wynne Liberals are prepared to spend $810 million over three years to help children and adults with autism and other developmental disabilities live more meaningful lives in their communities.
More than 21,000 adults and children are languishing on waiting lists for direct funding that would allow them and their families to pay for personal support workers, respite, day programs, training or other support that best meets their needs.
The proposed new funding, “the single largest infusion of support to the developmental services system ever,” would eliminate those waiting lists within two years for children and within four years for adults, Community and Social Services Minister Ted McMeekin told reporters in Hamilton Friday.
It would also provide residential care for more than 1,400 adults and children in urgent need and help more than 4,200 young adults access transition supports to help them leave school, move out of the family home or get a job.
“Our government is acutely aware that thousands of individuals and families are waiting for programs and services they need. This is not acceptable to me or to our government,” McMeekin said.
Ontario now spends more than $1.7 billion on developmental services. If approved in the budget, expected early next month, the new funding would boost total spending to more than $2 billion by 2016-17.
Community agencies helping people with autism and other developmental services praised the announcement and hoped that all provincial parties would support the new money, should the Liberals’ budget fail and the province face a spring election.
“This is fantastic news,” said Margaret Spoelstra of Autism Ontario. “The investment has been so needed.”
Waiting lists and the lack of funding in the sector generally has meant that agencies have been focused on crisis care, said Chris Beesley of Community Living Ontario, which serves about 12,000 developmentally disabled Ontarians, including about 9,000 in group homes.
“This hopefully will ease the crisis, so we can start to address the community needs list,” he said. “If we can invest more money in the upfront planning, helping people connect with community resources and system navigation, then that’s going to avert crises.”
At least four separate bodies have been looking into services for children and adults with developmental disabilities, including autism, over the past year as desperate parents fight daily battles on behalf of their kids.
In its interim report released in March, the Select Committee on Developmental Services listed a litany of problems, including the lack of day programs, respite and group homes as children finish school and transition into adulthood. The committee’s final report is due in May.
A chronic shortage of services for toddlers, school-age kids, teens and adults was documented more than a year ago in the Star’s Autism Project, as rates of the neurodevelopmental disorder have skyrocketed. The U.S. Centres for Disease Control is now reporting as many as one in 58 American children have the disorder.
In the fall of 2012, provincial Ombudsman Andre Marin, began looking into both individual and systemic problems as children with developmental disabilities become adults. To date, he has received more than 1,000 complaints from families in crisis. A spokeswoman said McMeekin’s announcement Friday was “unexpected” and that Marin would consider it in his report, expected later this year.
Meantime, a special blue-ribbon panel of experts is advising the government on evidence-based best-practices for children with autism. Provincial Auditor General Bonnie Lysyk’s annual report last December found autism treatment programs for children are plagued with inconsistencies and lack of accountability.
Parent Lillian Wagman, who has two teenage sons with autism and has struggled since they were toddlers to get the support they need, said families can’t wait another two to four years.
“Bread crumbs and morsels thrown our way to allegedly eliminate the years-long wait list are not helpful for the here and now,” the Toronto mom said.
“Families are in crisis. How many more drop-offs at government front doors are needed to prove that fact?” she asked. “Families are on the edge of survival.”
Toronto advocate Janis Jaffe-White, co-ordinator of the Toronto Family Network, wondered how the ministry will prioritize which children and adults waiting will receive funds, when now families can’t even find out where they are in the queue.
She also wanted to know how much of the designated money announced Friday will go directly into the families’ pockets.
Single mother Gloria Noseworthy is pleased the province is planning to spend more money on direct funding to parents of children with developmental disabilities. But in her Innisfil community north of Barrie, there are few programs for children like her son Zachary, 23, who has autism and numerous medical problems.
“Communities and businesses need to be more open to our kids as they become adults,” she said. “I hope some of the money will help make that happen.”
Noseworthy is looking for a business partner to help her open Just the Spot for Us, a storefront with seasonal supplies and decorations where adults with developmental disabilities could work with support. At the back half of the shop, she would like to provide day programming as another option for them.
MPP Monique Taylor, a member of the Select Committee on Developmental Services, urged the government to act quickly.
“Ontarians with a developmental disability and their families have faced years of underfunding, long wait lists, and inadequate supports,” said Taylor, NDP member for Hamilton Mountain.
“New Democrats will be closely tracking the government’s implementation of this promise, and their up-take of the committee’s recommendations, to ensure that families needing developmental services finally receive the supports they need,” she said in a statement.
If approved in the provincial budget, the proposed funding would help about 9,000 adults waiting for funding through the Passport program as well as an additional 4,000 expected to apply over the next four years.
About 8,000 children waiting for funding through the Special Services at Home program would receive help.
Children can receive up to $10,000 annually while adults are eligible for a maximum of $35,000 a year. Average annual funding under both programs is about $12,500 for adults and $3,800 for children.
An estimated 62,000 adults in Ontario have a developmental disability; more than 15,000 of them receive Passport funding. Of an estimated 28,000 Ontario children with developmental disabilities more than 12,5000 receive funding through Special Services at Home.
About 18,000 children and adults with a developmental disability are in group homes.